dizzygirl

HAPPY BIRTHDAY EMILY!!! I hope that you day is wonderful.... and that you are feeling ok today... happy B-day girl!! Linda

Lauren.. Hi I am so sorry that you are feeling so crappy... I am sending you some cyber hugs and comfort!! I have felt how you are feeling.. and I know that its not a good feeling..... I had to laugh over your cardia manic depression.. it struck me as funny.. Anyways Lauren I am sorry that you are feeling so pooorly.. and hope that you feel better today.. and were able to get alittle sleep... HUGS Linda

Hmmm.. interesting...I had never really heard of bio-feed back... and I was insulted that PCP...thinking that stuff is psychological... But it is worth a try.. a few weeks after my grandmother died in 2002.. my caseworker set me up with a lady who does meditation... and she taught me a few things... and I was actually able to get to e meditative state... I had never felt so relaxed in my life.. my body felt so weird... (LOL maybe thats what it is like to feel normal!!) but i think that I will give it a trry.... I am hoping that they will not udge me based on my past "mental health" diagnosises.. (being depression and PTSD...) Thanks guys Linda

I think that that is a wonderful idea.. and you should run with it.. the more education and public awareness that we can get out to the public is great..

Julie.. I am so glad that the cleveland doc was good with you!! I bet you got longer then 15 minutes.. huh??? LOL! (sorry gotta joke about that...LOL) I am so glad that you have some knowledgeable people helping you... and that they are taking you seriously.. that is great!! And also wonderful that you are able to get in so soon w/ the other doc... way cool... Glad you were able to meet up w/family...its nice to do something normal...even if you pay for it later... hugs to you Linda

Hi all thatnks so much for support!! I just want to hit home the fact that I truly trust Dr. grubb and have no worries in that regard... I guess I'm just alittle nervous in general...b/c I'm not real sure waht to expect.. you know the unknow ...I know that Dr.G would never suggest something that would make me feel worse.... Like I said i think the world of Dr. grubb.. he truly is godsent!! For the past 3 almost 4 yrs.. no other cardio would do an EP study on me.. and I feel that w/ Dr. Grubb that I finally am starting to get some help.. finally... Julie-- thanks so much for your generosity during my stay in toledo.. you'r a real sweetie!! And if you are ever in Erie.. be sure to let me know I'd do the same for you!! I will keep you all update.. Hugs linda

Most definantely!! Maybe I should print off some info and take it too her to read!..

Hi ernie.. yes ..i most defiantely trust dr.grubb on this issue... as he is the one who would know... and i have some comfort knowing that Dr. grubb is going to be the one doing the test and stuff.. I think dr. Grubb is great...but I'm still kinda nervouse (sp.. sorry I cant spell today.. i know that doesnt look right.. but cant think of the correct spelling!! LOL)

Hi another question for you... I spoke with my PCP's office yesterday.. and they want to send me to see a psychologist who does Bio-feedback for insomnia.... they told me that they want me to go see her this psychologist because they think that my insomnia is a psychological problem... I do not even know what bio-feedback is... and they didnt explain it to me.. and my insomnia is not the result of a psychological problem... I dont sleep because my Hr beats to fast... and I feel sick... and am having adrenalin surges!! I dont see how that can be psychological.. Am I too quick to judge here?? maybe they mean well.. but I just hate the fact that just because they cant find the root of things that .. I am again being labled as a nut case!! GGGGGGGGGGGGGGGRRRRRRRRRRRRRRRRR!! Have any og you gone through bio feed back for sleep? they said that this is a non medication way of sleeping...

Hi folks... I got home last night from seeing Dr. Grubb... and he wants to do an EP study... and if he can find the source of the tachycardia he wants to ablate... He told me that there is a difference (and so did Bev a few weeks ago) between pots tachy.. and the high tachy that I am having.. he said that mine is to high.. and that there is a difference in doing an ablation for pots and a rythym problem.. he said that he is not going to do an ablation because of pota tachycardia.. but because of a rythym problem.. I posted here not too long ago about my high tachy (204-240 resting rate).. so i talked to dr. Grubb about that... However I am quite nervous about this...I am scheduled for the EP study for November 21st..@12pm..I actually am not sure if he will do the ablation on the same day.. I imagine that he would.. I dont know.. the nurse told me that I would have to come back to get the results of it.. so I'm alittle confused.. and am going to call them tuesday and clarify... Have any of you had an abaltion done for a rythm (SP???) problem and not pots related? Will I still have tachycardia? HMMMMM averynervousedizzygirl!!

Hi nina.. I hope that you feel better soon... LInda

Oh you guys are too funny!! I used to be able to wear shoes with heals... but not no more!! stictly flat shoes for me.. orno shoes at all..(LOL! that is what I would preferr!! and warm ThicK fuzzy slippers!

Hi.. I get internal trmors... I called it shaking from the inside out.. I find that I get this when my HR is high.. or if my BP is high or low.. or before and after a syncope spell.. So i get it when my body is under stress.. Um.. I have not found alot to make it go away..sometimes you just have to lay down and let it ride out.. and once the BP/HR return to a somewhat normal state.. the shaking stops.. But yeah it is a part of pots..

Yeah Persephone!!! You made it!! Congrats!! go have some fun too!!

Hi... I have a problem with potassium levels myself.. early on in my pots before I was diagnosed and after too.. I would end up in the Er.. w/tachy and syncope.. dehydration.. and 9/10 my potassium levels are usually low.. they either will give me a dose of potassium in the er and that will be that.. or I will end up having to take potassium pills for 7-10 days.. then get my levels checked again.. and usually after a week on them giagantic horse pills.. its all good..

Hi folks! I appreciate the support... and I think that I am going to write a letter to the Walmart distric manager.. just so that they are aware.. I usually like walmart.. and I by no means mean to bash wally world.. but that dudes behavior was out of line!

Hi folks! I appreciate the support... and I think that I am going to write a letter to the Walmart distric manager.. just so that they are aware.. I usually like walmart.. and I by no means mean to bash wally world.. but that dudes behavior was out of line!

Hi.. I wanted to mention.. I have used albuterol in the past for breathing difficulties.. and albuterol can speed up your HR when you use.. that on top of an allready fast HR is not funny.. Um..I have been on all the meds that you mentioned.. including the breathing meds.. I dont remeber how the toprol and nadol affected.. all I remeber is that it didnt work for me.. and the atenolol I was on that about 3 yrs ago.. and it made my fatigue so much worse.. and I still was quite tachy.. In regards to advair.. can you get a stronger dose? and maybe it would help more? or maybe you need you astma meds changed.. Have you tried Nebulizer treatments? I found that that is what helps me most with breathing.. when I am badly flared.. that and there is a medication.. called the medrol pack.. I believe that it is a steriod?? I might be wrong on that.. but that helps with breathing too.. I have restrictive ling disease.. that was misdiagnosed for yrs as being astma.. I know what you mean about feeling like a guinea pig.. but I have to think that being a guinea pig now might help somebody in the future.. I know not alot of comfort right?? I hope that you start feeling better soon.. Linda

Hi.. um if you click on to the main dinet site.. then click on toSuport groups.. there is one support group in Ohio.. along with an email address.. so you could check that out..

Boy I wish that I lived near you guys!! I would love to be able to come to a support group with people who understand and get it!!

Wow! Miriam that is great!! Good for you.. fully favorable means that you have been approved! I did not know that you had to pay taxes on your lump sum..Do you have to pay taxes on your monthly check too?

Hi all... I am so frustrated and mad at the moment!! Well I went to walmart today to get afew things before I leave for Toledo.. and I was feeling quite potsy and sick feeling.. (it is very hot here today.. and humid too) So I thought that I will use one of those power chair things with the basket on them.. to avoid syncope and to be able to get in and out.. well my boyfriend and I walked in.. and asked for a chair.. and the Old man greeter said "well she looks fine to me.. I dont think she needs a chair.. we need to save the chairs for the people who really need them.." OHHHHHH!! I was allready cranky as my period and pots is knocking me through a loop today.. I started to say something to the man.. and then I bit my tongue and kept my mouth shut.. b/c I feel had I started talking to this man that I would have really yelled at him.. and that never solves any thing.. So I grabbed a cart and walked away.. meanwhile my Boyfriend is standing there trying to tell the man that I need to use a chair ... and he is babbling on about my legs... and i can here the greeter saying well if she is having that much of a problem the n I suppose I canlet her use a chair.." OMG!! a few minutes later my boyfriend walks over to me.. and I said you know.. you dont have to stand there and give the guy an explaination.. a simple may I please have a chair will do." I know that it not a real big deal.. but it just bothered me.. and I have never asked to use a chair before.. and I was feeling pretty crappy...I didnt think that it would be a problem!! People are just ignorant. and insenstive.. and I hate that people are so discriminating!! and judgemental... So anyways I just needed to vent.. as this particular incident just rubbed me the wrong way.. I have to go get MRI's done of my knee's and ankles tonight.. oh boy.. averyannoyeddizzygirl!

Hi..I am not sure about my pots...I blieve that I have had a dysautonomia thing going on since birth.. I was born 3 /12 months premature. and at less then a month old i had a PDA closure (patent ductus arteiosis).. and needless to say I have had a rocky road since then! But my mom told me that I have always had tachycardia.. that I even had it as a wee-bitty infant. (and I was wee-bitty at 1pound and 5oz...) I think that my pots may actually have some genteic factors going on.. that need to be further investigated.. But as for finding that "cause" of my pots.. we (me& docs) have no clue.. I was not diagnosed with pots until I was 20.. and the first times I "blacked out" I was about 11-12 yrs old..

Oh wow that is fantastic that he is doing so well.. and yes I do believe in the power of prayer.. and the many blessings that it brings..

Hi persephone! Here is a number to Dr. Grubb's office (or the hospital where he is) its toll free 1800-321-8383.. just ask to be connected to Dr. grubb's office.. I wish you all the luck gettting in.. I feel that he is well worth the trip to go see..he is very kind and compassionate... Linda